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关键词： clinical practice guidelines   diabetic ketoacidosis   evidence-based paediatrics   paediatrics   perception   attitude   and satisfaction   survey  

摘要： Rationale, aims, and objectives To explore perception, attitude, and satisfaction of paediatric clinicians, trainees, and nurses at King Khalid University Hospital towards clinical practice guidelines (CPGs) including the locally adapted diabetic ketoacidosis CPG (DKA-CPG). Methods A cross-sectional survey was distributed to 260 doctors and nurses working in the paediatrics department. Results The response rate was 95.4%. The respondents had a positive perception and attitude towards general CPGs and specifically for the DKA-CPG;98.7% thought CPGs were useful sources of advice, improved safety, and decreased risk, and reduced variation in practice. A total of 99.2% thought CPGs were good clinical tools, 98.3% satisfied with, had confidence in well-developed CPGs, and would recommend them to their colleagues to use, and 94.6% agreed they were cost-effective. The preferred format for CPGs was paper (46.6%) and electronic (42.9%). The DKA-CPG helped in managing patients and respondents were all satisfied and had confidence with it (100%). The rationale and objectives of the DKA-CPG were clear for 99.25%;98.5% thought the layout was clear and well organized and user-friendly (96.2%). Compared with nurses, physicians had a higher perception towards CPGs in general (P < .05) and the DKA-CPG (P < .05). Conclusions The paediatric doctors, and nurses have a great perception and satisfaction and positive attitude towards CPGs in general, towards the paediatric diabetic ketoacidosis CPG in particular, which in turn had a positive impact on the acceptability and implementation of the CPGs. These findings could help in sustaining a safe and high-quality health care environment through implementation of evidence-based CPGs.

关键词： endoscopy   Global Rating Scale   paediatric   quality improvement  

摘要： Introduction and Objectives: The endoscopy Global Rating Scale (GRS) is a web-based self-assessment quality improvement (QI) tool that provides a framework for service improvement. Widespread use of the GRS in adult endoscopy services in the United Kingdom (UK) has led to a demonstrable improvement in quality. The adult GRS is not directly applicable to paediatric endoscopy services. The objective of this study is to develop and pilot a paediatric endoscopy Global Rating Scale (P-GRS) as a QI tool. Methods: Members of the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) Endoscopy Working Group collaborated with the Joint Advisory Group on Gastrointestinal Endoscopy (JAG) to develop the P-GRS. After a period of consultation, this was piloted nationally at 9 centres and data were collected prospectively at 2 census points, May and December 2016. Results: The P-GRS mirrors the adult GRS by dividing care into 4 domains and includes 19 standards with several measures that underpin the standards. Eight services completed the online P-GRS return in May 2016 and 6 in December 2016. All pilot sites identified areas that needed improvement and post-pilot reflected on the key challenges and developments. Several positive developments were reported by the pilot sites. Conclusions: The national pilot helped ensure that the P-GRS developed was relevant to the paediatric endoscopy services. The pilot demonstrated that even in the first year of engaging with this QI tool, services were starting to identify areas that needed improvement, share best practice documents, put in place QI plans, and support greater patient involvement in services.

摘要： The article presents a case study of a 5-year-old boy with pruritic papules and plaques initially affecting his right leg and spreading to his limbs, buttocks and wrists. It discusses the Physical examination revealed multiple scattered erythematous, urticated papules and plaques on the patients's leg. It also mentions the case study of a 9-year-old girl who had a pulsatile erythematous plaque, along with pathogenesis of Quincke sign observed on the skin of patient.

关键词： off-label   medicine use   paediatrics  

摘要： Aim: The aim of this article was to determine off-label (OL) use in paediatric ambulatory clinics in a South African central hospital. Patients and methods: OL medicine events were documented in three paediatric clinics (general, highly specialized and dedicated HIV paediatric clinics) at Tygerberg Hospital, South Africa, and analysed according to South African medicine registration information. Results: There were 2167 medicine events for 658 children. Mean age was 5.6 years (interquartile range 1.8-8.8). There were 123 OL medicine events (6%). Extemporaneous OL use was most common (n = 58, 47%), followed by weight (n = 45, 37%) and lack of paediatric data (n = 38, 31%). Of note was OL use for weight for general paediatrics (n = 32, 78%, p<0.001), lack of appropriate paediatric data for highly specialized paediatrics (n = 26, 61%, p = 0.004) and extemporaneous use for HIV-infected children (n = 34, 87%, p<0.001), with significant less OL use for HIV-infected children (p = 0.009). Conclusions: Of note is significant extemporaneous OL use in HIV-infected children.

关键词： disparities   flow analysis   gravity model   paediatric   quality of care   spatial analysis  

摘要： Aim Publicly reported quality data theoretically enable parents to choose higher-performing paediatric practices. However, little is known about how parents decide where to seek paediatric care. We explored the relationship between geographic factors, care quality and choice of practice to see if the decision-making process could be described in terms of a 'gravity model' of spatial data. Methods In the context of a randomised controlled trial, we used a geographic information system to calculate flow volume between practice locations and participants' homes, to locate subjects within a census tract, to determine distances between points and to perform exploratory mapping. Generalised linear modelling was then used to determine whether the data fit a gravity model, which is a spatial model that evaluates factors impacting travel from one set of locations to another. Results A total of 662 women and 52 paediatric practices were included in the analysis. Proximity of a practice to home was the most important factor in choosing a practice (Z = -15.01, P < 0.001). Practice size was important to a lesser extent, with larger practices more likely to be chosen (Z = 8.96, P < 0.001). A practice's performance on quality measures was associated with choice only for women who had received an intervention to increase use of quality data (Z = 2.51, P < 0.05). Conclusions The gravity model and the concept of flow can help explain the choice of paediatric practice in a predominantly low-income, racially ethnic minority (non-White) urban population. This has important ramifications for the potential impact of publicly reported quality data.

关键词： Dilated cardiomyopathy   Myocarditis   Vitamin D deficiency  

摘要： Dilated cardiomyopathy is the most common form of childhood cardiomyopathy and is known to result in significant morbidity and mortality. This study aims to review the aetiology and associated outcomes of DCM. The median age at diagnosis was 6months (0-42months);n=23 (43.3%) were idiopathic;n=11 (20.9%) secondary to a viral infection;n=12 (22.6%) genetic disorders and n=7 (13.2%) as a result of vitamin D deficiency. There was a significant correlation between aetiology and mortality, r=0.85, with a lower survival rate in idiopathic and genetic cohorts. Males were significantly less likely to survive to 1year of age, p=0.035. The age at diagnosis did not alter survival to 1year and the predicted survival beyond 1year was 84.3% (95% CI, 71.3 to 94.5%). Severely impaired left ventricular fractional shortening at presentation (<15%) was an independent predictor of death, p=0.002, (95% CI, 11.2 to 14.2%).Conclusion: Paediatric DCM is a heterogeneous disease resulting in significant morbidity. The aetiology alters the age of presentation. Identification of a specific cause is a useful for risk stratification and prognostication. The first year after diagnosis is a critical time period reflected by the significant morbidity and mortality.

关键词： direct-acting antivirals   epidemiology   Europe   treatment   vertical transmission  

摘要： The burden of paediatric Hepatitis C virus (HCV) infection across Europe is unknown, as are current policies regarding monitoring and treatment. This collaborative study aimed to collect aggregate data to characterise the population of <= 18-year-olds with HCV infection in specialist follow up in a 12-month period (2016) across the PENTAHep European consortium, and investigate current policies around monitoring and treatment. A cross-sectional, web-based survey was distributed in April 2017 to 50 paediatricians in 19 European countries, covering patients' profile, and monitoring and treatment practices. Responses were received from 38/50 clinicians collectively caring for 663 children with chronic HCV infection of whom three-quarters were aged >= 6 years and 90% vertically infected. HCV genotype 1 was the most common (n 380;57.3%), followed by genotype 3, 4 and 2. Seventeen children (3%) with chronic HCV infection were diagnosed with cirrhosis, and six were reported to have received liver transplantation for HCV-related liver disease. The majority (n 425;64.1%) of the European children with HCV infection remained treatment-naive in 2016. Age affected clinicians' attitudes towards treatment;94% reported being willing to use direct-acting antivirals, if available, in adolescents (aged >= 11 years), 78% in children aged 6-10 and 42% in those 3-5 years of age (Pearson correlation coefficient -0.98;P 0.0001). This survey provides the largest characterisation of the population of children in clinical follow-up for chronic HCV infection in Europe, alongside important contextual information on their management and treatment. Discussion is needed around strategies and criteria for use of direct-acting antivirals in these children.

关键词： children   cytomegalovirus   haematopoietic stem cell transplantation   pre-emptive   prophylaxis   survey  

摘要： CMV infection is an important cause of morbidity and mortality among HSCT recipients. Optimal strategies for prevention and management of CMV disease following haematopoietic stem cell transplantation remain uncertain. We conducted an online survey of Australasian paediatric allogeneic HSCT centres on management and prevention of CMV disease in this patient group. We asked for one response from a representative of the HSCT team and one from a representative of the ID team at each centre. All Australasian paediatric HSCT centres responded to our survey. Management of CMV in pre-transplant setting was consistent between centres. All centres used a pre-emptive strategy to prevent CMV disease, guided by quantitative CMV PCR. In the post-transplant post engraftment setting, all centres recommended using ganciclovir (5mg/kg/dose twice daily) as a first-line therapy for CMV reactivation or disease, with treatment duration of 14 days, provided declining CMV quantitative PCR. There was substantial variability of practice between centres in post-transplant management of CMV reactivation, especially during the pre-engraftment phase. Similarly, there was lack of uniformity in indication, dosing and duration of maintenance therapy. Divergence was noted between responses from HSCT and ID physicians within centres. This study identifies areas of uniformity and others of great variability in prevention and management strategies for CMV in paediatric HSCT. Data on CMV infection and management in HSCT patients should be routinely collected as part of prospective trials to inform guidelines and improve prevention and treatment of this important complication.

关键词： Home telecare   telecare   telerehabilitation  

摘要： Introduction Tele-monitoring (TM) has proved effective in the home management of adult ventilator-dependent neuromuscular disease (NMD) patients. We aimed to evaluate a 2-year longitudinal multicentre TM trial designed for young ventilated NMD patients in terms of feasibility, home management of exacerbations and caregivers' burden. Methods The TM trial protocol included patients' weekly scheduled overnight home-recording of SpO(2), heart rate and ventilation and their transmission to each TM centre the following morning. Overnight data were reviewed by non-physicians and calls to families made to assess clinical condition. If clinical conditions (assessed by a scoring system) or overnight parameters worsened, either unscheduled transmissions or calls were activated and managed by non-physicians or medical team according to severity. Hospitalisations were compared with those of TM patients prior to TM start and with those of age-disease-severity-matched controls. Scores from the Caregiver Burden Inventory (CBI) questionnaire pre- and post-TM were compared. Results Forty-eight patients were enrolled, 30 males, median age 16.4 years (interquartile range (IQR) 8.9-22.1), median ventilation/day 10.5 h (IQR 8-16). Exacerbations in TM patients did not differ (59 versus 53;p = 0.15) from controls. Hospitalisations were significantly reduced in TM patients when compared with those prior to TM (11 versus 24, p = 0.04) and to controls (11 versus 21, p = 0.03). Median hospitalisation length was significantly lower in TM patients than controls (6 versus 7 days, p = 0.03). Caregivers satisfaction was excellent whereas no significant changes in CBI were seen (32.5 versus 35.5, p = 0.06). Discussion TM was effective in improving the home management of respiratory exacerbations in young ventilated NMD patients and overall well tolerated.